Family honour son with $1.25 M gift to help in the blood in patients with cancer enroll in clinical trials

8 March 2017

5 min read

Jason Carter died in May after battlng leukemia for more than four years.

(Carter Family)

The Carter family donated $1.25 million to be The Match Foundation in honor of their son, Jason.

(Carter Family)

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A Minnesota family’s recent $1.25 million donation to be the Match Foundation will go in the direction of building a better network for patients and their family desperately in need of a potentially life-saving clinical trials. Bob and Diana Carter, Wayzata, recently made the donation to the Minneapolis-based non-profit run by the National Marrow Donor Program in honor of their son, Jason Carter, who died in May 2016, after battling leukemia for more than four years.

Bob and Diana, both 62, were traveling back from Montana in February 2012, when the then 24-year-old Jason called about a bad blood test. Jason had suspected that he was suffering from symptoms of mononucleosis, but the test proved that it was actually acute lymphocytic leukemia (ALL).

“He had the boy’s form, which is very good to deal with,” Diana told Fox News. “But he turned out to be about a week later he had a chromosome is a mutation that is very difficult to treat.”

In the first instance, Jason underwent a month of intensive treatment with chemotherapy and a bone marrow transplant from an unrelated donor is set by The Competition. His cancer went into remission, and for more than a year, he was able to return to traveling with friends and continue his studies.

But in January 2014, the cancer returned, and the Carters learned about the complex and difficult world of clinical trials. Bob had read about a treatment being studied at the University of Pennsylvania that focused Jason, the mutation, but his doctors were not aware of this and focus on the family ClinicalTrials.Gov the national database of studies and ongoing research across the country.

“We started with the search and try to find information that would work for Jason, the nature of the disease,” Diana said. “Then we talked about the five centres that are offering a program — we went to a visit to the National Institutes of Health in Bethesda and Memorial Sloan Kettering [Cancer Center in New York].”

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In June 2014, the Carters chose to pursue one option at Memorial Sloan Kettering, which involved removal of Jason’s T-cells and the re-engineering they attack cells, before being infused back into him. In healthy people, T cells help in the fight against the disease, on account of the immune system, but by Jason’s ailment, his T-cells are weakened. During the trial, Jason is infected with a life-threatening fungal infection that required additional, aggressive treatment.

Meanwhile, chemotherapy had taken its toll on Jason’s bone marrow, and the doctors determined that he would need another transplant. Before they could explore options, Jason went into a full relapse in March 2015, but this time, the cancer has a different mutation, so the Carters had to go back to the drawing board and search for a new set of clinical studies.

“We found a study that was done at Cleveland Clinic in Ohio,” Diana told Fox News. “So we packed up the car and went to Cleveland Clinic thinking we would probably be there for a while, but the doctor said that he had not more in treatment before he was eligible for her treatment.”

The Carters back to the house, and kept searching and scouring the internet for the answers.

“We will investigate and try to find a cure, a way to kill the cancer and help him to survive,” Bob told Fox News. “He had an indomitable will to live. He really wanted to make a difference like we all do, have a normal life. We did what we could to help him.”

Through the website, the Carters detection of a possible trial to focus in Jason, the mutation at the University of Texas M. D. Anderson Cancer Center in Houston and inquired about it. The doctor’s evaluation of Jason was not informed of the trial, but had Jason entered and it worked to force the cancer into remission. The Contest arranged for an umbilical cord blood transplant in July.

While he did not suffer any major complications after the transplant, that he had contracted another life-threatening virus. The course of the following months, the aggressive treatments began to cause stomach problems, and he received immunosuppressive drugs reduce the symptoms but then the cancer returned.

“On May 10, Jason said: ‘Let’s get me healthy,'” Diana said. “On May 11, he said:” I am ready, take me home,’ and on 12 May, he died at home.”

The Carters met with The Contest after his death and discussed how to honor Jason in a way that would help to benefit others.

“After everything we have experienced, we really have the feeling that incredible need to see more patients in trials so we can advance medicine,” said Bob.

By the Carters’ donation, be The Match started the Jason Carter Clinical Studies Program, which will work to help patients find ongoing clinical trials that are tailored to their disease. The program is on the website of patients and families with resources to better understand the options and logistics of the registration.

“We are forever grateful to the doctors and medical staff for their care,” Diana said. “But this is something we can do to make patients more aware of, and more access, so we can help you to improve the results.”

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